National Down Syndrome Organizations Collaborate on Prenatal Testing Issues

ATLANTA/NEW YORK/DENVER (Monday, Nov. 19, 2012) – The National Down Syndrome Congress (NDSC), the National Down Syndrome Society (NDSS), and the Global Down Syndrome Foundation (Global) announced a collaborative effort to create multiple educational resources and tools to address prenatal testing issues facing pregnant women as well as the Down syndrome community.

Earlier this month, the Global Down Syndrome Foundation and the National Down Syndrome Congress published the first Down Syndrome Prenatal Testing Pamphlet, an accurate, informative, easy-to-read resource for pregnant women and their families. The pamphlet is available in English and Spanish at www.downsyndrometest.org and is being distributed to pregnant women and to medical professionals who work with pregnant women. The creation of the pamphlet included input from medical professionals, parents, and survey results from over 200 people in the Down syndrome community.

“NDSS applauds the efforts of NDSC and Global in getting this pamphlet out to women and families. NDSS has a long history of working on prenatal testing issues, and the NDSS statement on prenatal testing guides our involvement on this critical issue for our community, along with our Prenatal Testing Committee, made up of providers with decades of experience on prenatal testing, self-advocates, parents, board members, and staff,” said Jon Colman, President of NDSS.

In addition to the Down Syndrome Prenatal Testing Pamphlet, NDSC and Global support the prenatal testing information state advocacy initiative being rolled out by NDSS. As part of its effort to ensure accurate, up-to-date and balanced information on prenatal testing, NDSS has created a first-of-its-kind toolkit that encourages states to pass legislation modeled after a bill recently passed in Massachusetts.

The legislation echoes the Prenatally and Postnatally Diagnosed Conditions Act (also known as the Kennedy-Brownback bill), which increases the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions. This toolkit includes state model legislation and advocacy tools. NDSS is working with local Down syndrome organizations and its statewide government affairs committees to pass prenatal information laws in several states.

“The work of the NDSS and our pamphlet truly go hand in hand,” said David Tolleson, Executive Director of NDSC. “They are making the requirements of the Kennedy-Brownback bill – providing accurate information about prenatal testing and Down syndrome at the point of diagnosis – stronger on a state by state level. As they succeed, we will be there with our pamphlet to fulfill that requirement.”

“Working with NDSC and NDSS has been so exciting. As a parent, it is heartwarming to see so many excellent organizations coming together working on important global issues that affect hundreds of thousands of people,” said Michelle Sie Whitten, Executive Director of the Global Down Syndrome Foundation. “Besides NDSC, NDSS and Global, we now have Down Syndrome Affiliates in Action, the International Mosaic Down Syndrome Association and so many others. I honestly believe that today, more so than any time I have seen in the past, there is such a wonderful sense of passion, purpose, and professionalism in the Down syndrome community. When you put those three ‘p’s’ together, the impact we are having is truly astounding.”

NDSC, NSSS and Global all have important information about prenatal testing and facts about Down syndrome on their websites. To view that information, please visit:

Founded in 1973, the National Down Syndrome Congress is the oldest national organization for people with Down syndrome, their families, and the professionals who work with them. A 501(c)(3) non-profit advocacy organization, the NDSC provides free technical support and information about issues related to Down syndrome throughout the lifespan, as well as on matters of public policy relating to disability rights. Best known for its annual convention – the largest of its type in the world – the National Down Syndrome Congress is a grassroots organization recognized for its “family” feel, its “We’re More Alike than Different” public awareness campaign, and, its outreach to individuals from diverse backgrounds.

About the National Down Syndrome Society

Since 1979, the National Down Syndrome Society (“NDSS”) has worked to promote the value, acceptance and inclusion of people with Down syndrome. NDSS has about 350 affiliates nationwide. The NDSS National Policy Center works with Congress and federal agencies to protect the rights of people with Down syndrome, and educates individuals to advocate on local, state and national levels. The largest NDSS public awareness campaign is My Great Story, which ignites a new way of thinking about people with Down syndrome by sharing stories written by and about them. The National Buddy Walk Program includes over 250 walks. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.

About the Global Down Syndrome Foundation

The Global Down Syndrome Foundation is a public nonprofit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Formally established in 2009, the Foundation’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the U.S. committed to research and medical care for people with the condition. Fundraising and government advocacy that corrects the alarming disparity of national funding for people with Down syndrome is a major short-term goal. The Foundation organizes the Be Beautiful Be Yourself Fashion Show — the single-largest annual fundraiser benefiting people with Down syndrome. Programmatically, the Foundation organizes and funds many programs and conferences, including the Dare to Play Football and Cheer Camps, Global Down Syndrome Educational Series, and Global Down Syndrome Multi-Language Resource Project. The Foundation is an inclusive organization without political or religious affiliation or intention.

What people are saying

Great job! I really would have been grateful to have been given this when my son was born 2 years ago."

I have worked with individuals with Down syndrome since 1982 as a professional; and my biological son with Down syndrome is now 18 years old. I have NEVER seen a pamphlet like this ANYWHERE."

Thank you very much for taking on this important work, and for making this so comprehensive."

My experience with receiving the Down syndrome diagnosis was harsh and uneducated. It would have been comforting to read this brochure had it been available. Thank you."

Long overdue. Thank you for your efforts."

I have worked in the OB/GYN field for 26 years and have never seen such a well-written, comprehensive pamphlet such as this!"

Very useful information. We definitely want doctors to have all the knowledge they need to support their patients and families."

I wish I had any of this info 9 years ago when I was faced with the possibility of having a child with Down syndrome."

I'm so glad this is being produced. Thank you to everyone who has worked on this pamphlet."

Wonderful pamphlet! I wish I'd received such a thing when I was going through my pregnancy."

Not only is it a great intro for parents, but I like that you give lots of resources for follow-up. Great job!"

Terrific ideas and well connected."

I like the tone and the level of wording. It is not too overwhelming."

LOVE LOVE LOVE this!"

I think this is very well done and an excellent educational piece. Thank you for the effort and energy it undoubtedly took to develop this."

I feel this type of pamphlet will give peace of mind to new and expectant parents."

Thank you very much for taking on this important work, and for making this so comprehensive."

I wish that I had this to read when I had given birth to my daughter rather than being told I am sorry. It is time that people are educated and realize that the world is wide open and full of opportunities for people with Down syndrome and families."

This is marvelous."

I feel this is very balanced and informative."

This is well done. There is definitely a need for more good patient information."

Very good job. ... I feel this gives a realistic look at Down syndrome."

Excellent pamphlet overall. Thank you for all of your hard work."

I just wanted to say that I think it's such a great idea. ... Thanks for all of your work and dedication."

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Disclaimer

The information in this pamphlet is intended to serve only as an educational tool and is accurate to the best of the knowledge of the Global Down Syndrome Foundation and National Down Syndrome Congress. The reader should not rely on this pamphlet as medical advice. The reader is urged to seek competent medical advice from a licensed physician and other medical professionals who are knowledgeable about Down syndrome. The Global Down Syndrome Foundation and National Down Syndrome Congress disclaim any direct, indirect, consequential, special, exemplary, or other damages arising from any person following the information provided in this pamphlet with respect to any diagnosis, treatment, or action. The organizations do not endorse specific products or services, and any implications as such are unintentional.

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